In 2003, the Sophie Cameron Trust, the Medlock Trust and the Brownsword Charitable Foundation agreed to jointly fund a programme of research at the Royce Clinic to assess the efficacy of long-term intensive physiotherapy in an encephalitis lethargica patient with severe disability. Wide-ranging treatments including electrical stimulation of muscles, and passive and active exercise using an Oswestry frame, a tilt table, a motorised bicycle and a treadmill were planned, and one of the aims of the study was to see whether the improvements of mobility and function expected to result from such intensive physiotherapy (up to 25 hours per week) might be justified by reduced long-term costs for care and medical treatment of possible complications.
This project has now been completed, and a paper has been
written describing the methods and results under the title
a late rehabilitation programme for severe brain damage: A
single subject case study” by Alison Felix and Royce V. Menezes.
Sophie's Physiotherapy Programme Following Encephalitis Lethargica:
Rehabilitation for Sophie was very difficult and time-consuming; the reasons were twofold. Not only is there no evidence for a specific rehabilitation programme for this condition, but Sophie also developed complications during her illness.
It is generally accepted that rehabilitation for patients with brain disorders should follow the child developmental stages. The physiotherapists at the rehabilitation hospital had reached an end to what treatment they could provide for Sophie and she was sent home with a passive stretching routine to prevent soft tissue contractures. This left her family with very little hope for progress.
The Sophie Cameron Trust (SCT) has given moral and financial support that has been exceptional. The initial outline research carried out by the Trust indicated that there was hope for Sophie. The SCT also identified the need for the immediate development of a rehabilitation programme. The longer Sophie was left without working her muscles, the weaker they would get and eventually fibrosis and contractures would make it impossible for Sophie to recover.
An experienced physiotherapist offered to treat Sophie with some initial basic equipment, which included an exercise plinth and an electrical tilt table. This was followed by two advanced electrical muscle stimulators to re-educate muscle function. The result was that a new technique was developed to overcome the flexion reflex that had prevented Sophie taking weight through her legs. Following the advances that were made, the SCT provided an electrical ankle mobiliser in preparation for standing posture and then a newly developed unit that allowed Sophie to be suspended in the standing position. The suspension unit had the added advantage of being able to measure how much weight Sophie was taking through her legs.
Sophie was able to take all her body weight for a few seconds and this had built up to several minutes. Sophie had recently been doing some assisted exercise on an elliptical trainer. This was to try to teach her the walking pattern which would have progressed to a treadmill.
Without the help of the Sophie Cameron Trust and all its supporters, Sophie would not have made any progress. Sophie's family and friends worked tirelessly to help give Sophie her daily physiotherapy.
A special thanks to everybody involved.
What is Encephalitis Lethargica
SCT's Research Programme